"Nothing but the rain"

Unless you've been living in Gollum's Cave for the last few weeks, I assume you will have come across the news that Tess Munster, creator of #effyourbeautystandards has been given a modelling contract. As with anything else on the internet, nothing out of the ordinary can happen without extremes of opinion flying out of the woodwork faster than you can utter "I didn't see that coming".

Tess is 5'4" and a dress size 22 - as such she's far from the traditional size and shape found in the fashion industry. Whilst plenty of people have celebrated this as a victory over the stranglehold of the incredibly narrow vision of beauty perpetuated in the media, plenty more have waved their pitchforks in impotent rage and shouted into the void about what a terrible thing this is.

(Image from http://tessmunster.com/effyourbeautystandards.html)

Various arguments are being thrown about as to why that is. "The fashion industry shouldn't promote poor health" is the first. No, strictly speaking, it shouldn't and it has a responsibility for the media and imagery it produces. However, given that for years we have been discussing the trend of models who are underweight or suffer from eating disorders, this is hardly a new idea. We should also be considering the fact that the primary thing being promoted by the fashion industry is the fashion industry, because it needs to remain relevant on a massive scale.

Second among them is the typical "Oh my God, how is that person a model?!" I'm not even going to dignify that. If you're one of those people, take a fanned long look at yourself and consider your choices.

The one that particularly interested me in terms of this post though is more inextricably tied up with what #effyourbeautystandards is all about. I've seen many variations on the theme of "People that shape should not be comfortable with themselves."

To which I ask, who the hell do you think you are?

There is a difference between being comfortable with yourself and "promoting obesity" or however we wish to phrase it. How comfortable another person is with themselves has nothing to do with anyone else at all - it just simply isn't any of your business.

Why is it that when, just possibly, a small baby step has been made towards a wider representation of shapes and sizes in fashion (which is surely to the good of all), that people are so put out?

I suspect I can answer that. It's because it's something different.

There are a lot of people who don't like anything outside of the norm. It challenges the status quo, and that makes them uncomfortable. Things they don't understand frighten them.

Because they can't understand why a person at a particular end of the weight spectrum would feel happy and secure in their size, they try to impose their view. Anyone outside of the norm has " no right" to feel the comfort and security associated with that norm.

Something else to consider - there appears to be a (completely misplaced) sense that anyone outside the norm is immediately open to public consumption. Everyone else "owns" the right to have an opinion on them and to express it to them regardless of any hurt caused. In revealing I'm a fibromyalgia patient I'm frequently bombarded with everyone and their aunt's opinion on my "attitude" and various things I "should" be doing in order to feel better (because everyone's a doctor). In the same way, it appears anyone carrying extra weight is subject to the fact everyone feels they have the right to tell them what they should be doing with their own body.

Tess Munster is indeed overweight. However, it's her body, and I for one am behind everyone feeling as good as possible about themselves. I'm lucky in many ways that as a petite slim woman I don't have to try very hard to seek representation of someone my size and shape. However, I've still suffered through body hangups and feelings of inadequacy. Having done so, I would not wish them on anyone. The idea then that those outside of the average should be forbidden from feeling good is nothing short of disgusting.

(Even early 90's Disney got their head around the fact people are rubbish at dealing with "different".

Image from quotesandmovies.com)

The same logic can be applied to many things. To take the stereotype of "lazy" chronic illness patients, this sort of thinking would dictate these patients have " no right" to fulfilment and happiness because they are outside someone's box of understanding. They are yet again outside of the "norm".

I quoted Steven Erikson's thought on lifestyle fascists in this post. Humorous as it is, there's a serious point there. When you begin to dictate the parameters and ostracise those outside of them in terms of size, shape and weight, a lifestyle fascist is exactly what you're  becoming.

To further the alternative example of patients with chronic illnesses, to the narrow minded, anyone not out of the house in an average nine-to-five job is "lazy", so patients who are forced to remain at home much of the time are definitely squarely in their firing line. However, they can be doing plenty within their limits to help themsleves and to hopefully improve their situation - negative and ill-informed attitudes do not help. In the same way that attacking Miss Munster stands in the way of the very movement she has thrown herself into supporting, so attacking "lazy" patients can hamper their own efforts to effect change in their lives.

Also, here's an interesting idea to stick in your pipe until you choke - not everyone "can" get better. Not everything is curable. Do you really think you imposing your vicious inability to think outside the box is going to do anything except damage the person you've set your sights on?

But wait, everyone and everything should match your opinion, right? Nothing else is acceptable in your hopelessly narrow existence, is it?

And very neatly, we're back to those people who claim people the size of Miss Munster "have no right to be comfortable with themselves".

You do not get to dictate who can and cannot feel good about themselves, and neither does anybody else. You have no right to take that away from another person.

For me, I tip my hat to Tess Munster. If having just one single representation of themselves makes a group of people who usually cannot see themselves in the fashion industry feel better, then I refuse to accept that is a bad thing. It could well be the first step on the road to all shapes and sizes finding a space in fashion media.

Everyone has the right to self worth and to make peace with themselves - whether they match the ideals of what you wish to do with your own body or not.

If you do not accept that, I suggest you should have some long and hard self-examination ahead of you.


I'd love to hear other people's thoughts on this - even though I'm not in the group this is most relevant to, I still think the abuse and narrow-mindedness says a lot of damning things about people, and that needs discussion.

Wishing you all many spoons xxx

Wasted Years

So, understand

Don't waste your time always searching for

Those wasted years.

Face up, make your stand,

And realise your living in the golden years.

Iron Maiden - Wasted Years

We could call this a belated resolution for 2015, but it's going to take some explaining. You, my readers, seem to enjoy it when I have a bit of a rant - watch this space. It's going to be a rough crossing!

We as people are no stranger to the fact that, like it or not, we're bombarding by advertising. In the field of health and beauty, that advertising does only one thing: it reinforces the narrow societal standard of what health and beauty look like. There is no variation, it looks one way and one way only. If you don't look that way, well, you don't have a place in this society, peasant scum!

In my early twenties I not only became vastly more aware of the existence of this standard, but also became far more cognizent of the fact it is a huge problem unlikely to be solved any time soon. I then set about putting a lot of effort into rejecting it.

Firstly, I'm 5'3". No amount of exercise or wishful thinking will make me supermodel-tall. I'm also British and typically British-woman-shaped. Even if I carried not even an ounce of spare on my legs and backside, they'd still be the largest part of my body. My frame is built  that way, and years of horse riding, skiing, swimming and plenty of other activities have created a fair amount of thigh muscle that won't shift in a hurry. Since I booked my first lesson in returning to horse riding this weekend, I'm not exactly doing anything to disencourage maintaining that muscle.

Why am I telling you all this? Because recently I've noticed I'm back-sliding on all that work on rejecting the tsandard and being happy with me for me. I don't think I can pinpoint when this started, but it's been creeping up on me for some time now. It's finally reached the point where I can't really pretend it isn't there any more.

When in a reasonable mood, I can easily say this has been compounded by inability to really exercise for a couple of months post-surgery, a tendency not to eat properly for those couple of months because I was eating what was comfortable and easy to chew, and spent a fair amount of time swinging between no appetite at all and wanting to do this:

(Image from thisfelicitouslife.wordpress.com. Original "X all the Y"meme from hyperboleandahalf)

In some part it stems from a time last year where I put a fair bit of weight on. Being me, it went to one place and one place only. In my no doubt slightly skewed view, my arse was well into the realms where it could consider applying to have its own solar system with a more than reasonable chance of success.

I appreciate to some people that would be no bad thing. I however have always been very bad at accpeting changes in my shape as they don't occur very often. So infrequently in fact that I have no idea what to do save fly into a state of mild panic.

Hey, if you're going to overreact you may as well commit.

Now, I've lost all that weight and I'm about back to normal. You'd assume everything would be fine, but it isn't. I'm definitely still in "not good enough" mode. Now there's nothing wrong with wanting to improve a particular area, but it's more than a little unhealthy when your expectations become inflated and unrealistic, which mine certainly are verging on.

In doing a quick bit of internet research for this post, it astounds me just how many aids there are in feeling unsatisfactory within easy reach of a few taps of a keyboard. Weight calculators which take no account of muscle to fat ratio or general frame before they brand you morbidly obese. "Shape" calculators which are frankly nothing short of insulting unless your measurements result in "hourglass" - which we all know is the only valid shape if you're a woman and want to take up space on the planet. I'm a person and not a piece of fruit, thank you very much (I get "pear" shaped as often as not).

I think the point I'm circling around here is really one of just how insidious this sort of thing is. There is absolutely no such thing as "perfect" but it's surprisingly easy to become overwhelmed with the expectation to achieve it nonetheless. And do you realise what we do each time we buy into the instantaneous flawless skin, effortless weight loss and general impossible "glow" we're sold?

Yes, that's right. We reinforce the standard, each and every time.

I'm not sure if the same can be said of men, but women in particular are expected and encouraged to compete with each other instead of hold one another up. It's often difficult to make an innocent compliment without it being analysed for agenda and hidden intent for this reason. Said expectation not only leads to a lot needless unhappiness, but also to the idea that only one shape or size - the opposite of said standard is "allowed" to feel inadequate. We struggle to accept that everyone has "fat" days, and most people have some part of their body they like less than another and would be willing to change. It's an entirely human thing, and despite what advertising may suggest we are indeed all human.

We would do well to realise that we're all in the same boat. We would do better still to recognise that with a not insignificant personal effort, we can choose to ignore it too.

So, this is my late resolution. I'm going to kick this unhealthy line of thought and work hard at self-acceptance instead. I've managed it before, so I suppose I get the added bonus of having proof it's possible. I'm sure plenty of us have wasted years and years in pointless self-flagellation on this topic.

How about we be a bit kinder to ourselves? You might not always appreciate it, but there's nobody else in the world looks exactly like you - no matter what size, shape or weight you might be right now, because those three things will be fluid throughout your life.

We should maybe remember that this in itself is something worth celebrating.

(One this note, a new motto: "I have a Bridgeburners top, therefore I am by default mind-blowingly fabulous"
That should work.)

Don't mind me, I'm going back to swearing at Ebay in my attempts to find a new dress for Valentine's Day. Why I do this to myself I'll never know - I HATE shopping.

Anybody have any thoughts on this topic? I'd love to hear them. Did you make any similar resolutions?

Wishing you all many spoons xxx

Uprising

They will not force us.

They will stop degrading us.

They will not control us.

We will be victorious.

Muse - Uprising

And victorious we were! Those following my escapades in hopsital recently will be happy to know the Purple Wedding Surgery went very well indeed. The kin- er, tumour is dead!

I've now been home from hospital ten days, and my stitches came out four days ago. When I went in for the stitches to be removed I received the best news ever in time for Christmas - Joffrey wasn't a cancer. Plenty of people jumped straight to the conclusion that my hospital mucked up, so I'm not going to beat about the bush in their defense. None of my clinical team had ever seen a benign tumour behave in the way mine did, so they would have been in very dodgy territory indeed to have assumed to leave it alone. As it is, the news is tremendous and the hospital now have my signature to keep Joffrey for research - I like to think they're going to poke him with sharp things many, many times. Serves him right. 

The healing process has been relatively uneventful. The scar itself is knitting very neatly and aside from one day when the pain level was tremendous (as in, waking up and pretty much screaming the house down level of pain) it's been nowhere near as unpleasant as I expected. I managed to drive a short way yesterday for the first time and have been out and about a couple of times. I still tire ridiculously easily however. 

(There you go. It's nowhere near as angry as I was expecting, and it looks neater every day.)

There are some other side effects - my body can't quite figure out balancing saliva levels at the moment. My throat is permanently dry, so I'm drinking water as if it's going out of fashion and that makes the level bounce. I'm constantly alternating between a dry throat and a runny nose. It is already better than it was thought and will only improve. 

There was some fairly hefty damage to the nerve controlling my lower lip on my right side. I've seom exercises to do, but at the moment it doesn't really work properly. However, that also will hopefully improve over the first six months (although according to my surgeon full recovery is unlikely). I can live with that!

Luckily, most of the scar will be under my hair anyway so you will be unable to tell, and from a distance the portion that is clearly visible already looks like just a fold in the skin. I really can't fault my surgeon at all, he's done an incredible job. 

I'm still mildly surprised by what a shock something like this is to random passers-by though. I threw my hair up to try a dress on in a shop yesterday and the look the changing room assistant gave me suggested I'd brandished the Dark Mark and commanded her subservience. I mean, I haven't done anything to that photo above - that's what it looks like. Surely that's not that offensive to look at is it?

I understand it's something a little unusual and unexpected, but I think some of the horror-struck reactions are far from reasonable. Maybe it's swearing at people when I'm not looking or something. 

I could be on my own in this (not that such a concept has ever bothered me over much) but I'm quite resolutely not hiding the changes to my appearance. For the first couple of days out of hospital I was a little shy about smiling and laughing, because that's when you can really tell the right side of my lower lip isn't moving at all, and the muscles and nerve grew tired after only a little talking and so the change was more noticeable. 

After this though I shook myself and decided to get on with it - I refuse to be embarrassed about it or feel the need to try and mask it in some way.

We already have an unhealthy relationship with the idea of perfection as a society, but I do think it's a little sad if this idea has grown so unchecked that people can't handle the sight of a scar, or a slightly altered facial expression. Spending a week and a half processing the idea that you have cancer (although thankfully not the case) is a sobering reminder that there are so very many more important things to be concerned with. 

So, another photo. This was taken the day my stitches came out and I found out I definitely did not have cancer. I should probably be grinning like a maniac, but I'm taking baby steps with the damaged nerve. Slow and steady wins the race. 

It's not a perfect face, but it's mine and I'm quite fond of it. 

(Crooked smiles and accompanying new dimples are very this season, I hear *snigger*)

Hoping you all had a lovely Christmas, and wishing everyone a very happy new year (and many spoons!) xxx

Thin = Healthy

Oh please.

I don't usually consider myself a bad-tempered person. I'm usually pretty reasonable and generally I'm very level and cheerful. Occasionally however like everyone I will see red and then woe betide whatever the butt of my disapproval is. One such example of when I cross the boundary into an out of character temperament is when faced with an assumption that has been cropping up rather a lot lately in all sorts of discussions about chronic illness - that weight at either end of the spectrum is the sole cause of the problem.

OK, stranger. Let's say that I'm prepared to give your hypothesis even a moment's thought. Show me the medical qualifications with which you feel empowered to make such a sweeping statement. Nothing doing? So would you like to explain to me the relevant experiences of ill people which have led you to your false conclusion? The huge breadth of people you would have needed to meet and discuss this with in detail to have any hope of such a broad statement being remotely accurate?

Silence.

I'll tell you why you're silent. You're one of the ignorant masses who never pause to think beyond whatever Google tells them. You never give any thought to anything beyond the narrow boundaries of what society deems acceptable, and the actions of the mass media which enforce those standards. Bravo, bravo.

My weight has virtually nothing to do with my conditions. Interstitial Cystitis is an inflammation of the bladder lining - please explain to me how my weight whatever it may be could possibly prevent or cause such an affliction? No really, I'm waiting. I'd simply love to hear it. Obviously this is an area of biology and pathology I'm completely oblivious to so go ahead and educate me.

I dare you.

Fibromyalgia affects the joints, muscles and fibrous tissues of the body. Exactly how does my being "thin" stop the aches and stiffness, the sensitivity and weakness? Exactly what could my BMI (a flawed system to be sure) have to do with any of that?

When I first fell ill I lost nearly two stone in weight and I looked awful - there was nothing I could do and I was eating as well as I could with my rebellious digestive system. My explanations never stopped any comments of "You'd feel better if you just ate more" or "There's no point starving yourself to be thin".

(You most certainly are. Image from openmindhypnotherapy.co.uk)

Really? REALLY? Just who in the hell do you think you are?

First things first about me - I'm 5'3" and have a small frame. There's nothing I can do to change those two facts, and they define rather a lot when discussing size. I'm reasonably slim, but I work at it. The days of my being able to eat whatever I wanted and metabolise like a racehorse are gone, so I'm well behaved and the amount of exercise I do to keep the Fibromyalgia at bay is an enormous help in this regard.

I'll tell you a secret - I have no idea what I weigh. I don't weigh myself. Aside from if you have a medical reason for monitoring weight, I think it's a bad idea. It just seems too easy for self worth to become wrapped up in the number on the scales.

The heart of the matter is that the number on the scales only shows you one thing - a numerical representation of your relationship with gravity. When last I checked gravity was an infinite resource. Thin people are not wasting their allocation thereof, and bigger people are not *gasp* taking up more of it than they should. I'm fairly sure short of something catastrophic we're not going to run out of gravity.

The weight game is yet another hazard of an illness being "invisible". Weight sadly is visible, and it's all too easy for the ignorant to pin the problem on what they can see. Weight is not simply a matter or how much or how little you eat. I have known people who might eat like the proverbial four-legged herbivore but can't keep weight on because of inflammatory bowel conditions (one example cause), and still others who barely eat anything at all and still balloon in weight as a result of medications they have to take to have any hope of a productive day to day existence. Their weight is the effect of their illness, not the cause.

There is no difference between telling a thin person they should eat more and telling a bigger person to eat less, or exercise more. Either way you are being incredibly rude - whatever anyone else does with their body isn't required to match up with your idea of what to do with yours. In fact, nobody else's body is any of your business. Particularly when in the realm of chronic illness you're also being incredibly ignorant of the myriad of complicating factors which may determine the person's resulting weight - and how dare you presume to judge their eating and exercise habits as a stranger?

More importantly though, why is weight seen to be such a defining characteristic for us? Are "fat" or "skinny" really the most important things we could be as human beings? Are they really the standard by which everything about a person should be judged? Why is it seen as completely fair game to comment and expect no consequence for doing so?

A trick some people never learn is to engage their brain before they open their mouth. So many of us speak in ignorance when we should be quiet and learn, and in situations where we honestly do not have the right to comment.

You often hear this personified as "I'm a straight talker - I say what I think!" as if that's a get out of jail free card for whatever offence could be given by your words. Freedom of speech is not the same as freedom of consequence - and the latter seems to be what people are expecting when they envoke the former.

Happily for those of us less impressed with your behaviour, one day you'll meet someone who talks straight in return and I can guarantee you will not enjoy it in the slightest.

One final thing to remember, and it really sums up all of this post. Not a single one of us has to justify to anyone else the space (however much of it) we occupy in the world, and nor should we ever try to.

(Something to always keep in mind. Image from candidrecovery.wordpress.com)

Has anyone else been the butt of comments regarding their health and weight in this way? What did you do?

Letting the bee out of my bonnet and wishing you all many spoons xxx

The White Feather in the Tar

A somewhat different post from me this week, but I thought it might be useful for those whose skin tends to suffer along with the rest of their body at the hands of their chronic illness.

I have two separate recommendations for people to try – one a general skincare range, and the other a make-up one. .

I can hear the people who know me well giggling already at the latter. I am to knowledge of make-up what Jeremy Clarkson is to political correctness. It might be fun to flirt with it on occasion, but in general we just don’t get along.

The skin care is the Bodyshop’s Aloe range. A set of the cleanser, toner and day cream were gifted to me for Christmas and I have now been using it for about a month on a daily basis.

To give some context, I’ve tried a lot of the brands which recommend themselves for sensitive skin in the past to no avail. My skin became so angry with the Simple moisturiser for example that I was almost waiting for the day when the inflamed redness along my cheekbones would start to spell out swear words.  

However, the Aloe range seems to be the Holy Grail for my skin. One of the best key indicators was that none of the three products caused any initial sensation – usually, anything I put on my skin causes an immediate burning sensation. Anyone who tells you “That just means it’s working!” is wrong – it means your skin doesn’t like it.

The Aloe products don’t do that and thus far I’ve had no reaction at all. The redness across my cheeks is pretty much invisible, and albeit the unevenness underneath is still present it is nowhere near as pronounced as it was. Remarkably even when I was in a full flare-up following losing Misty my skin barely altered, whereas previously it would have been incredibly noticeable.  Price wise a full replacement set would be about £15 and using them daily the individual products would probably last a couple of months.

(Image from productreview.com.au)

 Now, the giggle-inducing part. My mum visited this weekend and we went ostensibly shoe shopping - yes, I’m nearly 25 and still can’t shoe shop on my own because shoes are terrifying and don’t make any sense. The shoe mission was painlessly successful in the end and I started scouting for a proper set of make-up brushes.

I’ve been slowly teaching myself a couple of “looks” as it were – I highly recommend Lisa Eldridge’s make-up videos on Youtube for anyone wishing to try this themselves – and had come to the inevitable conclusion I actually needed to buy  some half-decent gear if I was going to have any chance of success. I still view make-up as something to play with when I’m going out in the evening or to something special in the day – it will never be a day to day consideration. Having said that though, it would still be nice to learn a couple of things to a good standard.

Shoring up some courage I went to talk to a lady at the Liz Earle counter in John Lewis. The name actually meant nothing to me but it turned out to be an accidentally wise choice.

Previously I’ve always avoided make-up counters like the plague, mostly because when I was first flirting with the idea of make-up when I was in college, most of the make-up counters in our local Debenhams and similar were staffed by in majority young girls who had nothing better to do but tear apart their hapless previous customers for what they looked like and the stupidity of their questions. In my head they were therefore havens of hairspray-scented cattiness and were generally very unpleasant places.

It’s probably not surprising therefore that the reaction I expect upon approaching a make-up counter and admitting my lack of knowledge is one of “What idiot let this creature out?”

As it happened this couldn’t have been further from the truth. The lady in question probably spent the best part of an hour with us getting a feel of what I wanted and tailoring her advice to suit, as well as happily giving tips and tricks that were outside of the “official line”.  She then proceeded to try some of the products on me and I ended up coming over a little emotional at the results. The difference is staggering when somebody professional does your make-up. I don’t generally associate myself with the subtlely enhanced and rather pretty face looking back at me.

So, why do I think Liz Earle is a good choice for people whose skin is sensitive and flares up?

Answer: because you can’t feel you’re wearing it.

(Apologies, but I don't have anybody else's face wearing the make-up, so you're going to have to put up with mine.)

The make-up is so light and breathable that the only way I could fully tell I was wearing the product was from the slight cosmetic-y smell I kept catching on occasion. I couldn’t actually feel it. By the end of the try out I was wearing a base, concealer and blush on my skin and the lightness of it was tremendous. Score one against my idea of foundation being the sum of all evil and feeling like having wet cement painted on your face.

To further prove the fact, I took the make-up off last night and today my skin is clear. No redness, and it didn’t require the usual scrubbing away with water to the point of my skin actually feeling sore that I usually associate trying to remove make-up at the end of the night.

Liz Earle products get further plus points for their policy to not test any of their range on animals, and the fact that the make-up brushes and accessories are made from 100% man-made fibres.

The downside is it isn’t cheap. I spent a slightly eye-watering amount, but in hindsight it’s not as if I’d have to spend anywhere close to that amount in one go again in the future. You’re never going to be replacing everything at once (one hopes) and in my case the sparing usage will mean they last forever.

Talking about make-up and skin care seems to encourage a negative attitude from some people, that any interest in such makes you overly vain or alternatively that you must be attempting to hide behind the “war paint” because of crippling insecurities and confidence issues.

From a chronic invisible illness perspective, there's the even more irritating assumption that since the use of cosmetics can you make you look more lively and awake, "better" if you like, then you must be feeling better. If make-up is your day to day routine this can even lead to the assumption there's nothing wrong at all. I grow weary of the explanation of this, so I'll end with a simple thought.

Sometimes self-expression is just that and nothing more. 

I don't think I'm turning horribly conceited or hiding from anything (especially not my illness) in making some forays into make-up, I do look forward to on the rare occasions I want to look a little bit special being able to do so without the fear of angry, sore skin as a consequence.

I hope those suggestions are useful for others – please do let me know!

If anybody would like the details of the specific things I’m wearing in the photo or the Aloe skin products I’m using, please do shout up as I’m happy to share.

Wishing you all many spoons xxx

“…To be good great and joyous, beautiful and free.”

Regular readers will know from previous posts like New Horizons, Rainmaker and "All you have to decide..." that I have some very strong feelings on the topic of self confidence whether related to chronic illness or not. It’s a delicate and sometimes elusive sense of self that I believe everyone has the right to be able to find. Poor or shaky self confidence can have a negative impact on so many aspects of a person’s life, and I really think it’s something that should be treated with more importance and compassion than it generally is.

In approaching the question of whether suffering with a chronic health condition affects self confidence, I think it would be incredibly foolish to suggest otherwise. No matter what it does to you physically or mentally, it’s not likely to go away or if it does it won’t do so for a long time. Some people’s conditions can be managed well; others can barely be contained at all. Often the health professionals we go to for advice cannot help and long ago ran out of options for suggestion.

I think one of the particular ways this can manifest is when you have a partner, and even more so a healthy one. It’s surprisingly easy to fall into the trap of comparing everything they do to what little you might be able to manage and wondering at the fact you come up so short. It’s entirely human for both them and you to feel some frustration with this – but should any inkling of that surface then those feelings of anxiety and insecurity are only amplified.

One of the key things I think is incredibly important for this (and in a wider sense also) is to not put your self esteem into the hands of another person, whoever they are. In the same way you shouldn’t let the opinion of strangers have power over your confidence, although it’s harder it is the same logic to be applied to a partner or a close friend ill or otherwise.

More notably in the case of mental illnesses like depression and anxiety, it is important to remember the difference between the illness talking and the person behind it. There have to be boundaries in terms of unacceptable behaviour, but there should also be carefully guarded walls around yourself and your own confidence.

(Now this my friends is a wall.... The Wall From the South, Game of Thrones Wiki.)

I wouldn’t insult anyone by suggesting this is an easy lesson to learn. It isn’t, and I’m still in the process of learning it myself from both sides of the situation.

Furthering that note, for the ill person it’s equally as important to only be living within your own expectations and not those imposed or implied by others. Nobody knows your own body, your own condition and its entirely individual limitations the way you do – you live in and with it. Therefore you are the only person who should be setting expectations, and your thoughts on the matter are the only ones you should be paying attention to. When the expectations of others are unrealistic, you are not bound beyond all reason to attempt to achieve or exceed them. As important as it is to push and to try when dealing with long term ill health, it’s equally important to know when to say “no” to something and have the confidence to refute it and walk away before you risk yourself and your health.

When I say other expectations, mostly what I mean is the condescending kind lacking in any compassion. If you’ll excuse the vulgarity for a moment, it’s what I like to call “fix it bullshit”.

You’re too ill to hold down a job out of the house – make a job for yourself! You’re unemployed? Move to where there are jobs! You’re ill? Think yourself better! You’re unhappy with your life? Change it! I did X Y and Z which means everyone else regardless of circumstances can do the same!

I think that’s enough illustration of the attitude I’m talking about – which in other words means I’m going to stop typing it before I become too enraged with the stupidity of it all. In other words, it’s a complete refusal to live in the real world and understand that said world will not always dance to their tune no matter how self important they are.

That kind of attitude and expectation is potentially damaging to give heed to. We are all different and all faced with different challenges and situations in our lives. Not all of them are of our doing, and not all of them are within our immediate power to alter. Some things just have to be borne and cannot be fixed by just willing it to be so. There’s nothing wrong with tenacity and the will and drive to change your situation for the better, but it cannot be applied across the board to every circumstance. One size never fits all.

In the case of the chronically ill, our bodies and immune systems don’t want to stay in rhythm with the tune that we would prefer, and so we have to learn a new dance. That is a very different discipline altogether to the “fix it” approach – tapping your heels together three times and being whisked off to the Emerald City to ask the Wizard to fix it would be about as effective as “think yourself better”.

(I am unashamed to say that at six months away from a quarter of a century old, I still want a horse of a different colour.

Image from ollygreeneyes.blogspot.com)

There comes a point when you need to be able to recognise that working within your own limits and occasionally stretching them is still something to be incredibly proud of. The fact you can’t necessarily achieve what a healthy person could in your shoes should in no way be a cause to lessen that pride in yourself. You alone know your spoon count for the day, so you alone know what you can potentially achieve. You alone know when it’s time for a well-deserved day off also. You’re allowed those. Who is to tell you otherwise?

Your self esteem is yours and yours alone, and it is within your power to be kinder to yourself and to not entrust that esteem to the hands of others, no matter how close they are to you. You can reject what the wrong people tell you, and you can reject words said in anger and pain if you wish to. You do not have to listen.

In all the world there is only one you, and there will never be another. Each of us has a unique viewpoint and voice, and perhaps something only we can do. Each person has their own kind of magic. Each of us has it within ourselves to be as the title of this post – good, great and joyous, beautiful and free.

If your path to that doesn’t suit the expectation of those around you, maybe that isn’t worth worrying about after all.

Wishing you all many spoons, and just a little magic xxx

*The title for those who are wondering is an excerpt from the end of Shelley’s Prometheus Unbound. “This, like thy glory Titan, is to be good great and joyous, beautiful and free. This is alone Life, Joy, Empire and Victory”.

It’s a quote I’ve been quite fond of for some time, and for extra trivia it’s also a part of symphonic metal band Nightwish’s pre-stage ritual.

Don’t say I never tell you anything completely useless.

Unpretty

I’ve said numerous times on TRB that the blog has not only been cathartic and a chance to explore what I’m thinking, but more importantly it has been a vehicle allowing me to challenge those thoughts and habits of mind. What could be more challenging than to think of reasons to say “thank you” to my tempestuous lodger?

When suddenly faced with something all-consuming and unexpected like an incurable health condition, people mostly split into one of two camps with their behaviour – they either succumb to despair, guilt and feelings of betrayal and indeed risk becoming consumed, or they grit their teeth, shake their fists and say “sod you”.

Sometimes people do both, one after the other, which is what I did. I then repeated the process a year later after receiving a diagnosis, because once the joy of assurance that things aren’t all in your head wears off you then come face to face with “I have what? What do you mean you can’t make it stop?”

There’s a saying that for every door which shuts in your life due to circumstances, another will open. I don’t see affliction with chronic ill health to fall outside of that observation; it’s just admittedly harder to see how it fits, particularly at first when you’re still trying to figure out how exhaustion, pain and cognitive dysfunction can be made to fit into normal human function. “Square pegs in round holes” makes a pleasing metaphor for this.

I found that life was very organically brought into sharper focus. Suddenly I could see an array of things which had occupied my mind or caused me to fret and worry which were wholly inconsequential. They might have felt less than trivial at the time, but faced with something far more important to be dealt with on a daily basis you soon learn what is and isn’t worth getting angry or upset about. I am by nature very sensitive, but even so I’ve begun slowly to temper that with a sense of “Is this worth possibly having a flare up?”

(Sometimes even I have to laugh at how British I am. Image from www.panicposters.com)

One such triviality was the insecurity I carried over physical appearance. I always felt it was trivial, that there were far more important qualities to not only me but every other individual, but for one reason and another I could never quite make that philosophy stick in the face of the voice in my head who liked reminding me of all the possible (and probably a few imaginary) flaws.

I was an awfully unattractive teenager, and I’m not just being self-deprecating with that either. I had masses of frizzy hair, bug-eyed spectacles, a reasonably pronounced overbite followed by braces and neither a clue about nor any interest at all in fashion, makeup and such things. By around 21 I’d discovered layering, shed the braces and stumbled upon the wonderful inventions of thinned lenses and contacts so I looked far less like a buck-toothed electrocuted insect and a bit more like a human being.

I then fell in with what turned out to be a toxic group of people (toxic for me, at least) whose whole group dynamic and chief concern lay in one’s looks. You were either flavour of the month and hovering above the virtual cesspit of insecurity, jealousy and cattiness below or you were deemed unworthy, based on nothing more than your own physical appearance and whether you were prepared to do homage to the current favourite.

Thanks all the same, but no. All of that (I can see now in hindsight, perfect 20:20 as ever) seemed to grind any progress I might have made towards accepting the triviality of my worries to a deathly halt.

So my first reason for gratitude is that with Petunia to cope with and work around, I neither had the time or the energy to care about something so frankly unimportant in the grand scheme of things.

I still have days where I feel like something Misty threw up on the carpet, and whatever may be muttered about vanity and shallowness I still enjoy dressing up to go out. I don’t use makeup on a day to day basis so it has become reserved to a part of the routine of getting dolled up to do something special. I’ve recently been investigating buying a foundation for the first time because Miss P seems determined to make me look more and more like a Uakari monkey when she’s acting the goat, but it will be something I keep for sparing use just to give me a bit of a boost of confidence if I am going out.

(Blog post may contain liberal doses of sarcasm and exaggeration. Image from pixdaus.com)

The exercise routine has really helped with this too. Whilst a lot of people’s chief concern is how much they weigh and focus on the need to shift pounds to achieve a slimmer shape, I’m far more interested in what the exercise and a healthy diet are allowing my body to achieve. I’ll be discussing the effects of the dance workout I started in an upcoming post, but what I’m enjoying more than any visible shape change is the increase of flexibility, strength and fullness of movement in joints and muscles which have been stiff, weak and sore for some time. They’re still stiff, weak and sore a lot of the time but the difference is phenomenal.

For example having full movement in my hips after years of limitation is a great deal more interesting than how wide they are, and being able to make use of my core in a new and more effective way is far more important than what a measuring tape says about my waist. I can’t do anything about the skin reaction and wouldn't want to use makeup to cover it up every day, but in a way it’s evidence that my body’s still trying its best and I can make peace with that.

What my body looks like is never, ever again going to take centre stage in the face of what it is physically capable of and the work I can put in to improve this and to help it deal with my damaged immune system.

So Petunia? You came, you saw, but instead of wholly conquering you helped out a bit too.

Thanks. As you’re sticking around, shall we see what else we can do?

I plan to make this post the beginning of a series, as I’m slowly finding new ways to look at my situation. Can you relate to this, and do you have any gratitude of your own for the way your life has changed? I’d love to hear it.

Wishing you many spoons xxx

"I'm not like you and I don't wanna be...."

I’ve been meaning to write a post about the exercise I do to help with my Fibromyalgia for quite some time, but I’m going to hijack it as something most irksome links in with it and frankly I’m in the mood for a rant. I’ll post the intended subject another time.

I’ll let you in on a little secret: I absolutely can’t abide this current fad of “fitspo” or “fitspiration”. It couldn’t crawl under a stone and die quickly enough for me.

Now that might seem like a bit of a juxtaposition coming from someone who exercises regularly for the benefit of her overall health, but I shall explain. Firstly, I do appreciate that there is a certain brand of fitspo imaging which can be positive, and as I’ve said before if it isn’t broken then there’s no need to fix it and different things work for different people.

However, my distaste is reserved for the vast majority of the material which isn’t beneficial and can in fact be downright frightening. You’ve probably seen some of this even if you don’t recognise the term – a photo of a professional fitness model or athlete, cleverly lit if not airbrushed out of all reality and covered over by an “inspirational” quote.

My problem with the vast majority of this rubbish is that if it isn’t telling you that you’re not good enough or making you feel guilty for not spending every minute of every day exercising to the limit or carefully measuring out your super clean meal plan, it’s giving misinformed and sometimes dangerously bad advice.

I’m going to paraphrase this example as there are a few different versions “Crawling/sobbing/vomiting is acceptable, quitting is unacceptable.” If you’re actually exercising to the point that any of those rather unhappy things occur, then you’re pushing your body beyond its limits and you’re also massively increasing the risk of an injury.

(A version of the above. Oh, with added blood. Even better *sigh*)

Your body has those limits for a reason, it would be wise to listen to it and not risk further problems just because you’re being sold the idea that you’re somehow weak or not putting the requisite effort and dedication in unless you reduce yourself to a nervous wreck each and every time you work out. It might be disguised under a veneer of “inspiration”, but it’s actually both demeaning and insidious in its preying on insecurity over body image with those ever so unrealistic photos as a backdrop.

What fitspo is is yet another layer of imperfection placed on top of all the other things we’re told we should feel insecure about. Go out and buy our expensive workout gear, because you’re not good enough. Go and get an expensive gym membership, because you should feel guilty if you don’t.

It’s size zero with a protein shake and a sports bra, and it will end the same miserable way with plenty of people who are crippled by their insecurities and poor body image because they don’t look like the people in the photos.

This sort of thing can be even more toxic when you suffer from a chronic condition which prevents freedom of exercise. You’re already “just lazy” if you can’t exercise after all, so how are you supposed to compete against all this mass market insecurity peddling?

The answer is you don’t and you ignore it.

I think the question at the heart of this to ask yourself is why indeed you want to exercise and are doing so?

For me, I was always active and discovered Pilates about six months before beginning to have problems. It was something I could do cheaply via DVD in my own home and when I developed Fibromyalgia it remained a form of low impact exercise which I could tailor to suit. It’s very good for flexibility and stretching, which is key for me and my tendency towards appalling stiffness. I enjoy it and if I’m careful it can take the edge off some of the pain associated with Fibromyalgia.

My point is that you do it for you. Whatever form the exercise takes and however little you are able to do, make it a choice you make for your own enjoyment and well being. If you “clean up” or change your diet, do it for the same reasons.

The peddling of one body type and one diet as correct for all is distinctly unhelpful as well as being plain nonsense – body type is in some part down to genetics regardless of how much work you put in, and a lot of conditions prevent the consumption of certain food and drinks and so mess up that perfect diet you’re being sold. What if you can’t eat enough of the nutrients you need because of your illness and are limited to the formulated drink products doctors prescribe?

Different forms of exercise also have different impacts and affect people differently, but it’s yet another thing that gets watered down into this idea of one correct and “best” form that everyone should participate in. One fitspo image I came across was someone posting the picture below over and over again to promote the fact she’d taken up weightlifting:

(I realise in some contexts this is a lighthearted joke, but not in the context of oneup-manship. Image from crossfitriverside.com)

Charming. What if zumba is the only thing that helps your particular condition, or it constitutes one of the only forms of exercise you can manage? What if you can’t actually exercise at all? Does that make you any less worthy a human being than someone who spends hours of each day in a gym?

Can people not see what utter madness this is?

We come back to the same point – one size NEVER fits all, and particularly not bridging the gap between healthy and ill with the myriad of difficulties illness can present. We’re also into the territory of my favourite comparison game – if you’re insulting one body type, one exercise form or one diet in comparison to a different one to make it appealing, then you’re helping absolutely nobody and you’re contributing to the underlying problem.

I personally think you should do whatever you need to do to “feel” healthy. That will probably be a little different for everyone, and in the case of chronic illnesses the difference will probably be quite substantial. There’s no right answer or magic formula, it’s something that’s as individual as you are and comes down to what makes you feel good and what constitutes you feeling at your best.

The thing to strive for in my view is to be in a place where you feel happy and as healthy as possible, and you are doing whatever you can manage for enjoyment and to promote good well being overall. Weightlifting every day? Brilliant! Doing ten minutes of gentle therapy once a week? Wonderful! If getting out of bed at all was your biggest achievement? Great!

Sitting with your feet up and eating cake because that’s all you feel like doing today? Even better*!

If it involves accepting you look nothing like the unrealistic and airbrushed people in the “fitspiration” images and living your life your way and not the way they try to tell you to, then I say good for you.

(Fixes everything worth fixing. Image from bakecookeat.blogspot.com)

*My friend and I have a saying which we often repeat to one another when we’re fed up of what our bodies are doing to us – if it can’t be fixed by cake, it’s not worth fixing. Amen to that!

Rainmaker

"You tell me we can start the rain

You tell me that we all can change

You tell me we can find something to wash the tears away."

Rainmaker - Iron Maiden

I did something today which sounds small, but as a gesture towards the well being of the inside of my head I think it was deceptively momentous. 

I threw out all the clothes which no longer fit me or aren't comfortable post developing my array of chronic quirks. For the most part this means I've turned my back on jeans and given up on trying to fit into everything I used to wear with ease to just to try and prove a point to myself.

I know, it sounds like nothing more than a part of a normal spring clean. I just realised part way through that this was me finally letting go of my old body. Whilst I've moved forward in my thinking with my limitations, my dietary issues, the aches and pains and all the other symptoms themselves, I hadn't until now quite moved ahead with how I felt about the changes to my body.

Filling that bag was piece by piece putting all the worry, anger and upset away and affirming that I don't need it any more. Subconsciously I suspect I'd been clinging to the hope that somehow I'd wake up one day and my shape would have returned to what it once was, which was as foolish as it was unhelpful.

I've said on numerous occasions my only consistent pain relief is exercise. Now, when your diet doesn't change or maybe even cleans up a little and the amount of exercise you do increases, one of two things happen. You lose weight, or you build muscle. I've never carried very much in the way of excess weight so this left me with only the latter option.

The beginnings of a visible six pack? That I can live with and some days I'm even slightly proud of it. And to be honest with some thought, once the initial "Oh good lord, more leg muscle means bigger thighs" anxiety passed, there's nothing to be ashamed of in legs with a bit more shape to them - even when unplanned.

It occurred to me that fighting with very close fitting garments when you possess an alarming tendency for bloating was only ever going to be a losing battle and only served to be a stick I could continually beat myself with.

Well, said stick has been made into kindling for me to burn at my leisure.

The reality is whilst it's the only thing that works I cannot afford to let up on the exercise, and given that my body adjusts I seem to gradually need to do more of it to achieve the same effect. Given that these changes are only going to continue and it's about time I commanded the reins of the chariot of my confidence and swapped the horse of positive self image into the right hand harness.

So I don't look like I used to. Why does this have to be a wholly negative scenario? It doesn't, but for some reason I'd let myself believe it did. If you use the internet with any regularity you'll no doubt have seen plenty of body positivity messages about loving yourself flaws and all - as with many things it turns out it's an ever changing learning curve. Just because something changes doesn't mean you can't like the new as much as you did the old.

This seems a little wide of the mark in terms of relating to illness, but I assure you there's a purpose here. I've always believed your mental well being is one of the most important aspects in allowing you to find how to cope with chronic illness and all the challenges it brings. Allowing myself to keep raking over the same ground with my self image let the thought become insidious, and it started to have wider reaching effects on my overall outlook.

What brought all this introspection and new resolve on, you ask? I bought myself an Iron Maiden dress. Reading the measurements I realised the changes would actually make it a better fit rather than a more difficult one.

(The rather lovely handiwork of kittyvampdesigns on Etsy.)

When you find a lovely dress you can't help but fall in love with and unintentional muscle development will make it look nicer than it may have done previously, there are only two things you can do.

Accept and embrace the changes, and buy the dress just as fast as possible.


Has anyone else had issues with self confidence and self image as a result of their chronic ill health? How did you overcome it?

Wishing you all many spoons xx